helping Sam gain more independence
Selective Dorsal Rhizotomy (SDR) is the only procedure that permanently reduces spasticity.
A small section of bone is removed from the lower spine and the sensory nerves are exposed. Each of the sensory nerves are tested to determine if they contribute to spasticity, some of the nerves are cut. This will result in improvements in sitting, crawling, standing, walking and level of comfort. The degree of the improvement depends on the severity of Cerebral Palsy and muscle strength. At St Louis Children’s Hospital, USA bone is removed from only one level of spine resulting in nearly zero risks of spine problems. where as other centres remove 5-7 levels of bone increasing the risk of future problems.
Dr Park in St Louis, Missouri pioneered SDR Over 22 years ago and has the most experience of all the surgeons performing SDR. He is selective over who will benefit from the surgery.
A little over a year after Sam's hip procedure, we heard about SDR (Selective Dorsal Rhizotomy.) After lots of research and careful consideration we decided to apply to the Children's hospital in St. louis, USA. We sent videos of Sam’s range of abilities at that time. Unfortunately, Sam was not considered a good candidate for SDR. We were advised to work on improving his strength and to reapply at a later date.
Somewhat deflated but with a new determination we travelled to Scotland to see a highly recommended strength and conditioning coach who outlined exactly what was needed in order to get Sam to America.
A feeling of euphoria mixed with worry hit us hard 8 months later when we were accepted for SDR after the second run of videos were sent to Dr. Park at St. Louis Children’s hospital.
Due to the phenomenal support of friends, family and strangers we were able to raise the £40,000 needed to take Sam to St Louis. In late May of 2013 we went to America. The surgery went well and after only 5 days Sam was sitting up although incredibly weak. On the 7th day, being fully supported he took his first steps. To see and feel his legs move and be so relaxed was utterly amazing and so emotional. We knew this was the start of a new life for Sam and for us but also the start of intensive physiotherapy and strength building for many years to come so he could reach his full potential.
Dr. Park recommended “intense walking” and fortunately Sam’s spirited determination has got him to a point where, after much practice and continued physiotherapy, he, with the aid of a frame, walks.